Ileostomy - any tips for loose output and skin burn?

[Bellared]

Good evening all!

Right, DH's is on his right just under his ribs. Bit of a strange place but it was an emergency one put in Nov 08 and we're having problems. It was put in because of a year of being fobbed off by the GP saying it was IBS lose some weight and it will go. DH ended up in hospital and almost died on me as he had 7ft of impacted lets use the word 'matter' in there because of the constipation and it had caused bad ulceration of the colon and then were told it was a tumour but then told it wasn't. It's now suspected Chron's but they are STILL not sure.

It's prolapsed and looks like a large Aubergine so it is pushing the maxi bags off. Then we have the leakage. Its 100mm wide and pretty much that in height(oval shaped) and we're sticking the flange down with the hydro colloid strips but because of the prolapse it leaks alot and the output is often the diahorrors so leaks under the flange. We've been using DS's Sudocrem on the burnt skin and it has helped but the flange is then being re-stuck on the skin. DH does leave the bag off for the day or night sometimes(we just cover it in the swab/wipes that we get) as luckily it doesn't seem to poop much at night.

Please can you suggest ways to firm the output up a bit, reduce the amount of diahorrors DH gets and help with the skin burn?

The Stoma nurse does not return any of DH's calls and even though the reversal/re-sect op is elective the surgeon won't perform it until about 5 stone is lost but, due to the position of the Ileostomy we have been told by someone else that weight loss will be a problem as its positioning will affect his metabolism.

Long post I know but you lot have ridiculous amounts of experience on everything.

Thank you so much.

Sounds like you have been having an awful time of it.
The skin burn can be sorted out by using [[http://solutions.3m.com/wps/portal/3M/en_US/SH/SkinHealth/brands/cavilon/?PC_7_RJH9U5230GE3E02LECF TDQGK06_nid=WGG8L31D09beB385P3RT67gl this stuff] He will need the wand or spray applicator, and it should be available to him on prescription, I think.
I don't know very much about firming up output - but I think you should consider making a complaint abot the stoma nurse, it sounds like pretty shoddy treatment IMO

Doh, try that link again solutions.3m.com/wps/portal/3M/en_US/SH/SkinHealth/brands/cavilon/?PC_7_RJH9U5230GE3E02LECFTDQGK06_n id=WGG8L31D09beB385P3RT67gl

Cavilon is amazing stuff that I have used on babies stomas in the past. It creates a barrier film between the skin and the flange/bag. I'm not sure how he would firm his output up though. You must keep trying to contact the stoma nurse or just directly contact the dr your DH is being treated by. She isn't doing her job properly. Best of luck.

Thank you both. He's using the Cavilon spray and the Convatec Orahesive powder too. They are helping to an extent but it's going round in circles cos as soon as it's cleared up a bit it starts again and with the prolapse it's pushing on his lungs and has Asthma as a result of whats going on so is coughing the bags off if they've not pooped/pushed themselves off.

Would you go to the PCT to complain first or would you go higher? I'm going to include pictures of it (we've kind of been keeping a picture diary of its err development) and named it Sigourney.

I'm going to do the complaining myself as DH is always at work.

Hi Bellared, a quick google suggests that some ileostomy bag wearers use immodium to firm up their stools. As I'm sure you are aware, your DH isn't actually having diarrhoea. His opening is just placed before the part of the bowel that absorbs the water. Cavilon is excellent.

also karaya paste is brilliant...it evens out the skin contours so helps everything stay in place and helps to stop leakage onto the skin which causes the burning

Have you tried cavilon cream rather than spray? Sometimes people find that although the usual advice is spray or wands this can work better on skin around stomas.

Have you thought about using a thin hydrocolloid (eg. duoderm extra thin, comfeel transparent) on the skin, then applying the baseplate over that? Would provide protection from leakage, hopefully, promote healing and may remain in place at routine changes saving wear and tear on healing skin.

Sounds like the stoma is quite awkwardly sited, is it hard to get a good seal, are there areas which tend to lift allowing leakage and lifting of the rest at the slightest hint of bother? If so, could try some stoma paste- can be modelled to provide a good surface the base plate can fit flush to.

Some stoma appliances have an elaticated belt which can help to keep it in place. Don't suppose they would help much against the power of a cough though.

Sorry that you are both struggling on with so little help.

Please excuse all typos and bad grammar etc, typing one handed with wriggly baby on lap.

I'm horrified that you can't get hold of the stoma nurse, could your GP intervene?

As for thickening the output, 'stodgy' food is good - white bread, rice, bananas, mashed potato, pasta. Avoid tomatoes and citrus fruits, unless eaten alongside the stodgy stuff.

Lots of advice on this site.

Sounds a nightmare. Your poor DH. I have a permanent end colostomy. Mine is obviously a different kettle of fish as I can (in theory) eat pretty much anything but just need to deal with the consequences. Like I had half a bottle of bubbly on Friday night and my stoma trumpetted gloriously for a few hours last night. My hangover had been swiftly dealt with by a couple of domperidone left over from chemo .
I can't really share any dietary advice because my large colon is not too far off "normal", and my parastomal hernia is still fairly small.

I use cavilon swabs and appeel at every change to protect my skin.

I too am horrified that the stoma nurse is not returning calls. I would definitely ask your GP to intervene. It is not good enough.

Have you found any ostomy sites on-line? When I first got mine two years ago I spent a lot of time on www.ostomyland.com. My CA mag has recently advertised another site but it may have been a colostomy one and I've not been to have a look. But no doubt there are others.

DH suggests Fybogel - a bulk forming laxative - ignore the laxative bit and focus on the bulk bit. You can get it on prescription so it will be free. If he doesn't like Fybogel, he can get Psyllium Husk capsules from Holland and Barrett.

You also need to get him to look at his diet. Apple sauce is good as is marshmallows. Avoid tough fibrous foods as they will have the opposite affect.

Has your DH tried his local IA group or National IA for support?

here you go

My DH said unfortunately a lot of the stoma nurses are like that - here where we are there is fab support.

OMG, thanks for all your replies! I've not been on-line for a few days.

I thought of Fybogel too and got some Immodium for him to try. I did ask the pharmacist for suggestions but she told me to send him to the Dr. He is in work everyday atm on 12 hour shifts so can't get out to go.

Lilac, It's in a right awkward place too so it just comes off. It's mostly on the side where the opening is that leaks as rather than the hole being more central its at the side so it just comes out and under the bag. How do you use the paste? When deflated its 3.5" wide and 3" high but in a slightly square oval shape.

I have a picture of it as DH's contact pic when he rings me. I should put it on my profile but it'll make some people barf. We try and keep the situation light hearted and laugh when it farts at inappropriate times, it's the getting followed round supermarkets by security thinking its a load of bacon shoved up there.

Atm I am the queen of stodgy food well, casseroles and the like with lots of mash!

Hi Bella, I think we're going to give the Fybogel a bash. It's not been too bad the past few days.

Lilac, we tried the Hydrocolloid on the skin before the bag and so far so good.

DH says a big thank you to you all for the advice and we'll see how we get on.

We use Fittleworth for the supplies, can you get the Karaya paste from them?

Fingers crossed that the Fybogel works.

Has your DH looked at the link for the iasupport.org?

DH does a lot for this organisation - he is treasurer of the local one. He has also done various courses and is now asked to ring people who need a bit of support - could be the person themselves or wife/husband/partner who have questions. He even spoke to a Doctor last week who needed advice on something! He also goes to see people in hospital too.

Hi, my husband has had "Gladys" his bag for almost 2 yrs now, though awaiting reversal atm. I would have thought Fybrogel would only make things worse, more runny, Harry take Loperamide to thicken things up, it seems to work. You must get hold of your stoma nurse, thats terrible, they are the experts after all. Fittleworths are excellent, very efficient and helpful. Good luck

Bellavita, not yet, I'm going to email him the link so he can look at it when/if he gets a quiet moment at work. He's had all the top Council dudes in with him the past few weeks and then training new staff, luckily its a sit down job. Tell your DH to keep up the good work

Triplets, Gladys? LOL, we named it Sigourney amongst other things after Alien. I can't fault Fittleworths one bit. I'll remind him again about Loperamide and Fybogel. Love the pics! And good luck to you too. DH had intestinal cancer a few years back and was being treated for it when we met (been told this is not related in anyway)

DH was told today at work (one of the engineers wives is a nurse and had mentioned chest pest to her) that he should be off on the sick with it until it has been reversed. The Dr had also said that he should claim DLA for it. Are both of these true? It has stopped him from doing alot and can't run about after DS or even put him to bed cos it's in a silly place and is that big it would make a man jealous if it was any further down! nudge nudge. I do the heavy stuff. I order him not to refuse to let him help!

Thank you both.

You certainly can't claim DLA, or be justifiably off sick in the long term for a colostomy. He may be able to claim DLA for his particular stoma.

Thanks for getting back to me about it. He got told he might be able to but we thought and thought its best to check with people who have experience/knowledge first rather than fill out all the forms and stuff and waste an advisors and his time only to be told no cos he is able to walk and dress himself etc.

We're better off him working but today had his hours cut down so that will help him relax a bit.

I just need to get someone to employ me!

As already suggested you could use a hydrocolloid such as duoderm to act as a base around the stoma (protecting the skin) and then apply the flange over it. you can then use duoderm as an extra seal. hold you hand on the dressing against the skin to warm it and then it sort of melts making it more adhesive. also cavillon spray is slightly tacky if allowed to dry for 30secs before applying the flange.

What bags are you using? drainable bags would be better as you can just let any air out and that may reduce it bursting

re thickening the output, thats pretty much impossible if the stoma is very high up. jelly babies are worth a try as the gelatine can sometimes work. I am assuming that your GP has gone down the loperamide/codiene phosphate route already.

(for info, I not a stoma nurse but I worked in a colorectal ward where we dealt with emergency stomas which weren't sited properly)

hth

If you do think he needs to claim DLA you need to contact your local CAB. Bear in mind that the advisers there are sometimes prey to wishful thinking! The rules have changed recently but it used to be stuff such as: it's OK if you can boil a pan of water and cook pasta for one even if you should be cooking for a family of four. It took no account of normal family roles. I don't know anything about the old rules.

But I would agree that in every sense you/he are better off working with reduced hours.

Hi Thingone, we both are most defo best off working. I've applied for 3 jobs today (been redundant since Dec 08) and I'm climbing the walls a bit now!!!!!

Hi Fled, He's using the Dansac Maxi Bags which are drainable. I've been keeping up with the stodge (low fat where poss) and it's gone down great in this weather! The rings (Secuplast) seem to be helping but we need to make some adjustments as the edge is digging in the raw skin. We'll try the spray on first then the ring, then the bag. Jelly Babies didn't last long enough!

We're in a bit of a 'need to lose weight' situation as the surgeon wont do the reversal until DH's BMI is reduced but he can't exercise cos of Sigourney and work and I'm not adding any excess salt or fat to food. Do you know of any diet plans that might be of use?

Bellared - Glad the rings seem to be helping. you could try putting the duoderm under the edge where its digging to raw skin. Is the bag still leaking even with the Dansac bag? If it is, I would try "sealing" round the flange with duoderm (as I suggested holding your hands onto the dressing as the heat will make a better seal).

The other thing I was thinking about last night was how active the stoma was and how when you are cleaning it, touching it will stimulate it. I would cover it with a damp cloth whilst cleaning the surrounding skin and if possible, let the surrounding skin breathe for a few minutes before reapplying the bag.

Am not sure if you have used a hydrocolloid such as duoderm (in case you havent guessed I'm a huge fan as its fab for poorly sited stomas). You only have to change it when its dirty or coming off as the dressing itself is designed to stay on the skin for up to 7 days. Its ideal to get a decent seal on a stoma bag and then leave it in place for as long as possible (especially if you have a drainable bag, you have no real need to change it every day)

I can really advise you on diet esp if they are still not sure of a diagnosis. Have you had a dietician referral? I would push for this initially. Although exercise is good to loose weight, I would try the diet route first in this situation.

Smaller portions? Have you seen www.foodfocus.co.uk? You can input actual calories so you can work out how much (little) he needs to eat. In working out how many calories he needs as a baseline you can take account of the fact he does nothing active and it will reduce it accordingly.

I was unwell when I first started trying to lose weight (steroids and misery eating over six months made me HUGE) and it helped me.

(disclaimer: I do realise a colostomy is a lot easier to manage but ....) I went to a (private) physio to get some good advice about how to learn to exercise and use my body again. This was great, and after a few months doing this and swimming (which isn't good if he's leaking) I've now moved onto a well qualified personal trainer. It's not necessarily a cheap route but I wasn't getting fit just walking and there is no way I can go to an exercise class until I'm absolutely confident what my body can do. Before I started exercising I managed to lose half a stone (twice, lol) in about four months. Since August I've lost a stone.

Hi Fled, that's how he is sealing it. But it has helped!

The prolapse is 9" long and touches the funnel of the maxi bag and you can imagine the pressure of the darn thing on his lungs! This is what is pushing the bag off.

The rings are Secuplast Hydrocolloid btw.

I've started using smaller plates and where DH works he doesn't really get time to eat so only eats here really (at tea time).

Bellared - its difficult for me to suggest anything else without seeing the stoma iykwim. I would speak to the consultants secretary about the stoma nurse (he will be working with her) and see if you can get input from another nurse. The consultant should also do a dietician referral.

a stoma nurse has (should have) access to all the rep's products so would be able to try any new/trial bags that may be more suitable.

sorry I've not been much help.

Fled, you have been a great help and so have the others.

I could send you a pic of the stoma if you wanted? Just showered and minty fresh. We've kept a bit of a picture diary of it. Let me know anyway.

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